Circadian Rhythm Problems

[heapsreal]

we usually have dysfunctional hormones that arent synched with our proper sleep cycles. So i think if one supplemented all these hormones(that one is low in) that are suppose to be high in the morning like cortisol, dhea and testosterone etc etc in the morning when they should be high and possibly bromocriptine which can help reset the body clock. then at night phos serine or some other cortisol blocker at night with melatonin and sleep meds?? can help turn our body clock back to close to normal. This seems to have helped me but it aint perfect. I do seem to be sleeping better then i was. I also havent done any actual night shifts for over 2 years, i finish at either 6pm or 11pm which has been a good help. If i was forced to do night shifts then i would have to push the cfs/me immune dysfunction card which i have kept from my employee so far, then see what happens.

For some of us i just dont think melatonin on its own is enough, we need to try and control our other hormones to sync our body clocks??

 

[caledonia]

Clonazepam depletes melatonin. You also need to take melatonin with it. This happened to me after taking for about a month. When I finally tapered off, I needed the melatonin for another month.

fyi, beta blockers do the same thing.

If you've been on the clonazepam steadily, you'll need to taper off gradually.

 

[soxfan]

I just had my melatonin checked through saliva.he did am and pm but don't have the results yet. I have been on half milligram since (klonopin) last August but am not sure I can sleep without it. I am waking up so tired ..almost like I can't wake up . It usually happens when I sleep too late which is 7 am for me and in the middle of a dream.

I think I am dreaming too much for some reason. I didn't know klonopin depleted melatonin. I think I will take 1.5 mg melatonin tonite..thanks for the info.

 

[Ocean]

Hi Ocean, I would encourage you to give melatonin a try. A typical dose is 3 mg, but you can buy it in 1 mg capsules, and you can then experiment with even smaller amounts by only taking a fraction of a capsule. I've found it invaluable in helping restore a fairly stable sleeping schedule.

I believe I read recently that most people today are somewhat "melatonin-starved", and I suspect pwCFS are especially so. I think I remember feeling a bit "hangeroverish" the first few days I started taking it, but it was nothing compared to the clonazepam I took for many years. I'm currently off the heavy duty benzodiazapines, and doing well on 3 mg/melatonin nightly. My low-dose hydrocortisone therapy has also helped in stabilizing my circadian rhythms.

Good luck in finding something that works well for you.

Best, Wayne

Thanks Wayne. Were you having a delayed sleep issue too before taking the melatonin? Thank you!

 

[Wayne]

Wayne- How much clonazepam were you taking? I only take 1/2 mg and am beginning to wonder if this is giving me poor sleep. I have been on it for months but am finding my sleep quality is getting worse. I take it along with Kavinace and maybe will just try Kavinace and 1mg melatonin...

Hi Soxfan,

I believe I started out at about 1/2 mg, and gradually upped my dosage. I found I needed ever increasing amounts to be able to sleep, and eventually ended up at 2 mg/night. It was at this time I began to experience what felt like new and concerning neurological symptoms, and I suspected the clonazepam was responsible (though I was never able to determine this one way or another). I did a fair amount of research on tapering off of it, and gave myself a full year to do it. This tapering off process needs to be done very cautiously.

Even after I was totally off of it, I wasn't sure I could stay off, as I continued to feel an "edge" in my system for several months after my final dose. It was at this time I discovered micro-current therapy (Alpha-Stim), and I was able to use this very effectively for myself. I used it several times a day for the next 1-2 years, at which time I found I no longer needed it to keep my neurological system calmed down.

The problem with benzodiazapines is that we build a tolerance to them, and a lot of people have to gradually increase their dosage just to maintain the benefits. I believe Dannybex (member on this board) has researched some of the not so good long-term downside of them, but I can't remember what they are at this time. I was on them for about 10 years, and am Sooo happy to finally be off of them. I appreciate every morning I don't wake up with a Clonazepam "hangover".

I hope this helps.

Best Regards, Wayne

 

[Wayne]

Thanks Wayne. Were you having a delayed sleep issue too before taking the melatonin? Thank you!

Hi Ocean,

Yeah, in a major way. It seemed like I could feel just horrible for the entire day, and then all of a sudden around 9:00 - 10:00 p.m., things would shift, and I would start feeling a little bitter, and even have a bit of energy. It was a relief to feel better, but it generally meant not knowing when I would finally get to sleep. I remember it generally ranged from 12:30 - 2:00 a.m. or so, but could easily be even later. Occasionally, I wouldn't go to sleep till close to sunrise. As much as I tried to avoid this, I finally settled into accepting it for what it was, and tried to make the best of a time where I at least didn't feel quite so miserable.

I was grateful to find Clonazepam, which helped me restore some normal sleep times, but the price was to wake up each morning with a "Clonazepam hangover", sort of nauseous and sluggish. But I drank coffee back then to pull myself out of it. I never felt coffee was very good for me, and was able to mostly stay away from it once I quit taking the Clonazepam. Discovering how well melatonin worked for me was instrumental in my being able to get off of the Clonazepam. The other piece was taking low-dose hydrocortisone (Cortef). Our cortisol levels normally peak about 4-6 a.m., and when I was able to supplement in the early mornings, I no longer started "waking up" around 9-10 p.m. at night.

 

[SickOfSickness]

I had a lousy sleep specialist who didn't want to discuss circadian problems, REM problems, etc and wanted to blame it all on my habits. I guess I have DSPS or Non-24 but doctors don't seem to know about it or care. They think it's because I am depressed or lazy and letting myself sleep too late, and not doing exercise or getting out.

I function worse if I don't let my bedtime drift. But once I reach a certain time, I have to advance 16 hours around-the-clock in about 1 week. So it becomes a cycle, advancing 8 hours in about 2 weeks and then the 16 in 1 week. It is not what I want! It has big downsides. It is what I'm naturally drawn to do, and when I fight against it, I have worse insomnia, worse fatigue when I'm awake, worse anxiety or depression or both, and sometimes other symptoms. During the 2 weeks, I fight sometimes to only advance 8 hours, I am naturally wanting to advance more, but I found it works better if I don't need to do that 16 so often. Sometimes I let the 16 happen over 2 weeks but it's hard to get errands done and there are potential problems. I have tried many ways and I am still trying to change it.

I actually feel pretty good if I only sleep a couple of hours. After a few days of this, though, I'm a basket case.

I think there was a thread where a woman wrote she "cured" her CFS by sleeping a lot less? I feel better when I sleep less too, but I can only do it for a few days, and it gets me into a mildly manic state.

 

[soxfan]

Thanks Wayne....I am seeing a new (wonderful) doctor and I just had a 3 hour appt. with her. She understands all of this because she has chronic EBV and knows exactly what we all go through. I am starting to take 1/4 of melatonin at night since my levels were extremely low (10.5) lowest end should be at least 25.
If I ever feel like I can't sleep on 1/2 mg of Klonopin then I will try and switch over to something else. She has a lot of ideas on what to help me.

I am also going to be scheduled for another sleep study since my first one I only slept 2.5 hours the entire night. She just wants to get an idea of my sleep stages.

I would encourage anyone here who is having sleep problems to get your melatonin level checked through saliva. Have the am and pm done because the doctor said some people have very high morning levels which could cause the sleepy feeling. She said with this illness anything is possible. Mine was fine in the am but I almost NEVER feel sleepy at bedtime.

Neuroscience will do the testing.

 

[Wayne]

Thanks Wayne....I am seeing a new (wonderful) doctor and I just had a 3 hour appt. with her. She understands all of this because she has chronic EBV and knows exactly what we all go through. I am starting to take 1/4 of melatonin at night since my levels were extremely low (10.5) lowest end should be at least 25. ......... If I ever feel like I can't sleep on 1/2 mg of Klonopin then I will try and switch over to something else. She has a lot of ideas on what to help me.

Hi Soxfan,

That's great you've found somebody who sounds like a very competent and understanding doctor. And it sounds encouraging you're most likely going to be able to keep from ever having to go above 1/2 mg of Klonopin. Congratulations on your successful efforts to start getting on top of this all, as sleep is so important. Just opens up that much more potential for other therapies we might try.

Best, Wayne

 

[SickOfSickness]

I've heard you can go up to 15mg of melatonin, I believe you should ramp it up slowly, perhaps 3mg increments?

Interesting. That's a lot! I'd be scared to take more than 3-5mg in a day. I take about 1mg and I used to take less.

 

[soxfan]

All you need is 1mg or less....taking any more than that can be dangerous. My doctor just went over all that with me. Most people have no clue on how much to take or when to take melatonin. Taking more is not the answer to a better sleep....

 

[SickOfSickness]

All you need is 1mg or less....taking any more than that can be dangerous. My doctor just went over all that with me. Most people have no clue on how much to take or when to take melatonin. Taking more is not the answer to a better sleep....

It's scary that they sell 3mg and 5mg tablets. People think they need that much. I hope they don't sell higher amounts.

 

[Hip]

I had horrible sleep cycle problems. Going to bed later and later 1/2 hour to an hour each day until my cycle was completely reversed - over and over and over. This went on for years! I tried everything listed on this thread and more. All it did was make me more tired.

I have exactly the same thing, Caledonia: I find I always seem go to bed later and later each day, typically advancing my bedtime by around 1 hour each day. After a few weeks, I find myself completely out of sync with the outside world, waking up a night, and going to bed in the morning.

I think the reason for this sleep cycle drift is as follows: experiments have shown that even in healthy humans, the internal body clock is actually set to a 25 hour (not a 24 hour) daily rhythm. This fact was discovered by placing people in a house with blocked out windows so that they could not see any daylight at all, and therefore could not receive any daylight cues from the outside world. These people were then found to automatically adopt a 25 hour day, not a 24 hour day. This experiment shows that our internal (endogenous) body clock is set to a 25 hour daily cycle; it is the environmental daylight cues we receive each day that re-syncs our body clock back to a 24 hour cycle. Ref: 1.

My hunch is that in ME/CFS, the brain is not properly receiving or acting upon these environmental daylight cues, and so the body reverts to its endogenous 25 hour circadian rhythm.


Glutamate and the Circadian Rhythm

For those interested in the excess brain glutamate model of ME/CFS, this study found that aspartate level in the brain is regulated by our endogenous, internal body clock; but our brain glutamate levels are modified by the light-dark cycle. So it could be that the excess brain glutamate hypothesized to exist in ME/CFS is interfering with the brain's response to daylight cues, such that the brain does not act upon the environmental daylight cues, leaving the body no choice but to run on its endogenous 25 hour circadian rhythm.


Note on Light Therapy and Melatonin

In this thread, people have said that neither light therapy or melatonin helped them to maintain a normal 24 hour circadian rhythm (and I also found this to be the case). These results tie in with the finding of this study:

Therapy of circadian rhythm disorders in chronic fatigue syndrome: no symptomatic improvement with melatonin or phototherapy.

 

[soxfan]

They actually sell 10mg melatonin as well....people think more is better but in this case it definitely is not.

 

[perchance dreamer]

I find a couple of products from lowbluelights.com helpful. I use a pair of their amber glasses about 1 hour before bed and also an amber light bulb in my lamp for reading late.

 

[caledonia]

Right - bright light therapy and melatonin didn't do anything for me. However, blocking blue light in the evening (with amber sunglasses) did.

In reference to the glutamate - I was taking either theanine or GABA for many years to balance glutamate and GABA. So maybe that made the difference when I added the amber glasses.

Here is what I do know - several things happened within a few weeks of each other - my sleep starting going into a normal pattern, I didn't need to take GABA any more, my thyroid and adrenals have improved at least 50% to where I can cut back or stop meds/supps for them.

Anyway, I agree, the normal signalling from environmental cues is blocked or not functioning in ME/CFS.

 

[Hip]

I'm happy to report that with methylation treatment, this situation has turned around all by itself in the past few weeks. I'm now going to bed around midnight and getting up bright and early in the morning.

Did you adopt any particular approach to methylation to get this more stabilized circadian rhythm, results, Caledonia? My own experiments with methylation don't seem to have yielded much improvments (in any quarters).

 

[Gypsy]

caledonia, do you know if they make these amber sunglasses in a "clip on", because I wear prescription glasses and would need to still be wearing those as welll. I tried wearing my prescription sunglasses at night, but it did not help. Oh yeah, it was really fun stumbling around the the dark with sunglasses also...lol

Hip
SickOfSickness

wow. I have the extact thing you are describing. Sleep moving forward around 1hr a day. Melatonin, light therapy, chronotherapy, all either did not work (in past, when I was just DSPS) and makes me terribly ill if I try them now (with non 24hr). It totally destroys my sleep actually.

I did methylation for years, it did not correct or improve my sleep at all.

 

[perchance dreamer]

Gypsy, lowbluelights.com does sell a pair of amber glasses you can wear over your regular glasses. Maybe other sites offer amber clips for your glasses, but I've never seen them:

https://www.lowbluelights.com/detail.asp?id=24#

 

[Gypsy]

$68 is too much for me. Are there any cheaper glasses? I checked amazon and there are a lot of amber glasses "sunglasses" but I dont know if they work the same way. I could go in for around $35 for a pair if anyone has any leads? Seems like they should not cost so much?